~ A Compendium of My Inane Ramblings, Photos & Assorted Detritus of Life

Category Archives: Parenting

We were accepted into The Variety School of Hawaii this past week. Needless to say, it’s been quite a summer. From getting her diagnosis, to applying to The Assets School and then getting referred to The Variety School, it’s been a whirlwind. And here I thought I’d get to relax while she went to camp!

School starts for us next week & as much as I thought she’d fight us on it, because, lets face it, what kid doesn’t love getting to sleep in, she’s really looking forward to it. She’s counting down the days, looking longingly at her pile of supplies on the table that used to be our homeschool table, and talking about what she might do at her new school.

While we’re very excited that she’s going to be in a great place where she’ll fit like a hand in a glove, we’re more than a little concerned about the financial aspect of the whole endeavor. For a child like Aidan on the ASD, tuition is $28,500/year. We were able to get grant-in-aid funds to bring it down to $19,150/year. We’ve enrolled in Tricare-ECHO like good little lemmings. The school is great. They provide individualized instruction, speech therapy, occupational therapy, adapted PE, remediation where needed, enrichment where needed. Really it’s everything she needs. But, because they don’t provide ABA (applied behavior analysis) therapy, & therefore aren’t considered “approved ECHO providers”, ECHO won’t pay one thin dime. Of course.

Excuse me ECHO, I don’t want her behavior modified nor do I want her “cured”. I happen to like her just the way she is. She is incredibly gifted and if this school can remediate her working memory and her processing speed (& maybe as an added bonus, develop a few social skills) her IQ will be off the charts and she can talk to people about what she knows without scaring them off.

So the $64,000 question is this, to whom do I appeal this arbitrary decision? Surely I don’t take the word of a call center functionary? I know there have been instances of ECHO paying for special needs schools. I need to know who to talk to, how to get a hold of them & just how high this Warrior Mama needs to climb to fight. Because believe me, if there’s money out there that can be used to pay for her education, I’ll fight tooth & nail to get to it. Not just to save our family a few measly ducats but damnit because we’ve sacrificed for it and they owe it to us. She wasn’t even 2 when her Daddy went to Iraq, just a baby. He got home in time for her 3rd birthday. Tell me she doesn’t deserve a good education from her Uncle Sam.

So, like her doctors thought, Aidan has Asperger’s Syndrome (based on the DSM-IV) or Autism Spectrum Disorder (based on the DSM-V). What we also learned (but weren’t all that surprised about) was just exactly HOW gifted our child is. We always knew she was smart. We usually say that she’s “Too smart for her own good.” Based on the IQ tests administered, she falls at the very top of the highly gifted range, about a point from the superior gifted range. To be honest, that kind of blew me away. Because of her Asperger’s she has some issues with working memory & processing speed (typical problem areas for Aspies). But, with some neurotraining & education to develop those areas of her brain & bring them up to the same levels as the other areas, her IQ could go even higher…potentially limitless. I feel like my job as her mother just got a zillion times harder…raising a little genius comes with great responsibility.

For the third time in the eight months we’ve lived in Hawaii, Aidan has wandered away from the safety of our home & small neighborhood enclave out to the main road. There’s a large playground near the top of the valley, we think that’s been her aim each time. There’s a creek that runs along side the valley where a lot of wildlife lives. I fear that if she doesn’t go to the playground, she’ll try to get down to the creek. Today was the third occurrence of her wandering and she was gone for at least an hour. If Ryan hadn’t brought her home, my next step was calling the Honolulu Police.

She told me she was going outside to play with her “friends” across the street. I say “friends” because the four kids that live across the street are not nice to her (nor me for that matter), and I really don’t like her playing with them. She’s oblivious to their snarkiness & rude comments but it still doesn’t make it right. Anyway, she said she was going to play, I initially said no, she begged, I caved, she went to play. After about 30 minutes I realized I hadn’t heard much kid noise in a bit, better go check (living in HI, we keep our doors & windows open for ventilation). The kids said she went off “with her friend” (which turned out to be a big fat lie). When I asked who, they shrugged; where, shrugs again. Thanks for the help. She was no where to be seen on the street so I called up to Ryan to come help me look for her. I stayed at the house while he walked around the neighborhood. He finally found her, out on the main road “barking like a dog.”

She had no idea that she could’ve been in any danger. But that’s the thing: children with autism are often the most difficult to teach about the dangers associated with wandering such as drowning, getting struck by a vehicle, falling from a high place, dehydration, hyperthermia, abduction, victimization and assault.

RESEARCH

The Centers for Disease Control and Prevention (CDC) estimates that an average of 1 in 88 individuals in the U.S. have an ASD that can cause significant social, communication and behavioral challenges. These challenges often present unique safety risks, including those associated with a person’s tendency to wander or elope from a safe environment.

According to data released in April 2011 by the Interactive Autism Network (IAN) through the Kennedy Krieger Institute (KKI):

– Roughly half, or 49%, of children with a autism attempt to elope from a safe environment, a rate nearly four times higher than their unaffected siblings

– More than one third of children with autism who wander/elope are never or rarely able to communicate their name, address, or phone number Aidan knows our phone numbers, my name, Ryan’s name, rank & where he works but has a hard time with our address. We need to work on this.

– Two in three parents of elopers reported their missing children had a “close call” with a traffic injury As busy as that main road is, this is my biggest fear. She just goes off into her own little world, exploring & imagining, not paying the least bit of attention to her surroundings.

– 32% of parents reported a “close call” with a possible drowning Knowing that she has no fear & has none since she was a very tiny baby, we put her in swimming lessons young, the kid swims like a fish. Of course, if she falls or is some how incapacitated, all of those lessons are right out the window.

– Children with ASD are eight times more likely to elope between the ages of 7 and 10 than their typically-developing siblings All of her wanderings have been right in that window…7 & 8 years old.

– Half of families with elopers report they had never received advice or guidance about elopement from a professional Nope, not a bit. All I know I’ve read online from my own research.

In 2012, the National Autism Association found that from 2009 to 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with autism subsequent to wandering, and that 23% of total wandering-related deaths occurred while the child was in the care of someone other than a parent.

We’ve informed Aidan that she is no longer allowed to leave the house without Mama or Daddy with her. Each of her three wandering incidents have been as a result of us letting her go outside on her own, mistakenly trusting her. Now that we have a better grasp of what’s going on (or, more accurately, NOT going on) in that little head of hers, we’re hoping that prohibiting her from going out on her own puts a stop to the wandering, rather than having to put the whole house on lockdown. We’ve been lucky each time but God knows we can’t press our luck.

Today is the first day of second grade for Aidan. I truly cannot believe that she is in second grade already. When I taught in Georgia at the little Catholic school right off post, one of my best teacher friends was the 2nd grade teacher. Her name was Mrs. Zimmermann, but Aidan, who was 3 at the time, called her “Mrs. Cinnamon”. Aidan went to Pre-K there at the time and after school, I’d hang out in Mrs. Zimmermann’s room, talking about the Journalism team (I helped her run the team since I was the technology teacher). Aidan would play with her daughter, drawing on her whiteboard, spraying it with water, erasing it and starting over. Mrs. Zimmermann’s daughter was in 2nd grade then and I remember thinking how big she seemed and how little Aidan seemed. Now Aidan is that age. Time goes by so quickly!

First Day of Second Grade

First Day of First Grade

First Day of Kindergarten

First Day of Pre-K

She’s grown up so much from age 4 to age 7! I guess I don’t see it because I’m with her everyday but when I look at pictures like this, it’s so obvious! My baby is growing up into a little girl! Before I know it, she’ll be asking for car keys and going off to prom!

For those of y’all who may not know, Aidan has been diagnosed with ADHD for about 4-5 months now. Her type of ADHD is primarily hyperactive/impulsive. She has no problem with inattentiveness and can concentrate on a given activity for hours, especially arts & crafts and cooking.

This past school year, when Aidan was in first grade, her new teacher in AZ was shocked to learn that she was on Concerta. She would call me to rave about how sweet she was & how she wished she’d had her all year long & would love a class full of Aidans. I felt like telling her, we’ve come a long way, baby!

The beginning of first grade at Randolph Elementary in San Antonio was pure hell. Between acting out violently towards me, inappropriate behavior in class, and Aidan being impulsive ALL.THE.TIME, her teacher, Ryan and I were about at the end of our ropes. We tried positive reinforcement, taking away toys, and just about everything else we could think of and nothing worked in the long term.

After Christmas when her behavior started to get atrocious, I removed the emotional element & approached the situation as an educator. If Aidan were one of my students and was acting like this, what would I do. So I started doing research into her impulsive behavior since that seemed to be the driving force behind everything she did, impulsivity. The more I dug, the more the compass needle started to point towards ADHD. I never thought of her as hyperactive, I just always figured she had two speeds: full throttle and off. Yup, that’s hyperactive! And hyperactivity goes hand-in-hand with impulsivity.

So off I went to school with a handful of research. We were very blessed to have two counselors at Aidan’s school who cared very much for her well-being and had a great rapport with her. I took the research to them and as soon as the words “I would like her assessed for ADHD” were out of my mouth, it was like light bulbs went on over their heads.

You’re probably thinking: “Why didn’t the counselors catch this? Isn’t this what they do?” The vast majority of (ADHD) studies have been conducted solely on boys, or, have included very few girls in the sample. As a result, the scientific literature on ADHD/ADD is almost exclusively based on male subjects. Among the girls who were diagnosed with ADHD/ADD…only 7% had the Predominantly Hyperactive/Impulsive type. (From here) Plus, Aidan has been tested as intellectually gifted (she was tested in kindergarten) so that makes it even harder to detect. So now, by being gifted and ADHD, she’s considered twice exceptional or 2E.

So now we have our assessment results from the school stating that yes, she is in fact ADHD, so off to BAMC (Brooke Army Medical Center) we go to see the Child Psychologist to confirm the assessment and the pediatrician to get medication. Unfortunately getting meds from her pediatrician was like pulling teeth. She was what you might call a “Tiger Mother”, didn’t believe in ADHD or medicating children. We had to get her child psychologist involved to interpret the assessment results for her & explain that “Yes, she really does have ADHD” & we do need to try meds to see if they work for her in the classroom. Her ped actively tried to make me feel like I was trying to drug my child so I didn’t have to deal with her. This did not sit well with me. I had to explain to her that I did my research & wouldn’t put her on medication if it wasn’t warranted. Don’t tick off this educated Mama Bear!

Once we got her on Concerta it was like I got my baby girl back. No more impulsive behavior, no more violence towards me, nothing but my sweet girl.

We saw her new pediatrician here in Arizona yesterday for a new dosage (she’s grown & put on weight over the summer) and he was a dream…SO unlike the ped in San Antonio. (The “nurses” on the other hand, were a WHOLE different story…I don’t like to be talked down to, especially about things I know WAY more about than they do).

If you think your child, especially your girl, might have ADHD, advocate for her. You know her better than anyone else. Do your research. Check out quality website like the following for symptoms, check them against your child’s behavior & present your findings to the school counselor. Be clear about what you want. Tell them, “I want my child assessed for ADHD”